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Thursday, April 6, 2017

While We Wait

Looking back to that phone call two weeks ago, when the results of Tessie's MRI came back, I realize that the person who called selected their words very carefully.

She said "I was calling to let you know that your daughter doesn't have the brain malformation we were looking for. She doesn't have the Chiari malformation."

"That's great!" I said, barely feeling relieved as I began to worry about the next bath of tests.

I quickly announced on Facebook that the MRI results were good.

With perfect hindsight, I realize that that wasn't what the caller from the pulmonology clinic had said though. She never said that the MRI was good. She said that they didn't find the malformation they were looking for.

Yesterday a thick packet of paper arrived from the geneticist's office. This is something new that's begun to arrive from our doctor's offices lately since they've switched to a new office operating system.

Most of the packets arrive with a list of immunizations and a few sentences about what the appointment was about.

Well baby check.
Developmental delay.
Central apnea.

stand one on top of the other in a neat line down the page.

This envelope bulged with the weight of the paper it held and when I ripped it open I found pages covered with a tiny font with some of the words in bold, and others in ordinary type.

I made dinner and paused for a moment in the kitchen, the papers catching my eye. Paul had called at lunch time and announced that he had gotten a call for a job interview that was going to take place in at a restaurant at dinner time, so I knew that he wouldn't be home. I'd already thumbed through the papers once, but this time I leaned against the counter and read it line by line.

I almost didn't pick it up a second time because I thought that I already knew what it said. It had information from my conversation with her geneticist in the PICU and then later about her appointment. When I was nearly done reading through the notes a section in bold caught my eye:

Brain 3/20/17: GRE hypointensity associated with glomus of the right lateral ventricular choroid plexus is probably due to previous choroid plexus hemorrhage. Other calcifying or hemorrhagic lesions the choroid plexus are less likely.

I tried not to freak out. I failed. I managed not to call Paul and ruin his interview.

I served dinner and got the kids into their pajamas and got them to bed and congratulated Paul when he called and announced that he had got the job and would be starting first thing tomorrow (today now). And I googled "choroid plexus hemorrhage" and "GRE hypointensity" and then "what causes a choroid plexus hemorrhage?"

And then I watched Tessie sleep and wondered if she had had a stroke before she was born.

By the time Paul got home I had already reminded myself at least a dozen times of how well she's doing now. She's pulling herself up to stand. She's saying "dada" and "mama." Earlier this week after I posted about how she won't eat or put anything in her mouth, she grabbed a piece of pizza and tried to devour it.

But I also remember the feeling in the hospital when I was nursing her, or watching her lay silently in her bassinet, and I felt like something was just off. She isn't a normal baby, I kept thinking and then I asked myself what I really knew about "normal babies" anyways.

She was just so quiet and "good," always sleeping and never fussing or crying.

This morning I left a message on her neurologist's nurses line, saying that I didn't think they'd probably seen the MRI results from the other hospital yet (it always seems like it takes a while before they get the results) but that I'd seen them and I had a question. Then I read the sentence that I'd read a few dozen times since I first spotted it and said that I was hoping they could call me and tell me that it wasn't as terrifying as it sounded on the report.

I'm still waiting for a call back. I'm guessing her doctor wasn't in today and I'm praying that he's in tomorrow and that they call me back before the weekend.

And that they tell me that it sounds way scarier than it actually is.

In the meantime I'll keep looking at her, because, I mean, look at her.

She couldn't be any more perfect and lively and lovely.

As always, we appreciate your prayers and thank you for bearing with me while I write out all the thoughts bouncing around inside my head, trying to barrel their way out.

4 comments:

I understand your panic and fear. But this is the perfect time to begin to train yourself to put ALL of your trust in God. I have followed your blog since Maggie was about 2, and have read many of the things you have written about your children's health problems and issues. I understand that after a while it seems like just one thing after another, and can be terrifying. But honestly, what can you do about any of it, except try to make excellent decisions after listening to doctor's advice? We are not in control of these things.

I understand it is a horrible roller coaster...one possible horrible diagnosis eliminated, but other more horrible diagnoses possible, and uncertainty day after day until the doctors come to some kind of conclusion.

All you can do, really, is pray and trust in God. This is the kind of thing that is beyond our control, and we are best served when we realize when we are not in control of any of this, all we can do is trust in God in the midst of it.

I can relate in that I took care of my elderly parents for 15 years after my mom's devastating stroke that left her left side paralyzed and unable to walk. My dad used a walker after a slight stroke a few years earlier than hers. I took care of them daily in their home, and there were many health crises over those years. Eventually I realized I had no control of any of it, and only could respond as best I could.

I know health crises in little kids is much different than in elderly people. Most of us think elderly people have lived their lives, and if they should die, though it's sad, it's inevitable. But when you are the one sitting in emergency rooms, or waiting outside ICUs for results of tests and diagnosis, the emotions are the same. You can feel very alone and very helpless.

It's at this time I learned to just trust God for the outcome, always praying for health, but learning to say, "Thy will be done." That was hardest when my parents were dying. But I said it, and I meant it. It is the Garden of Gethsemane. But you cannot avoid it...no matter how great your decisions have been, or how great the doctor or hospital is, or how much you feel it is the worst thing that could possibly happen.

I will pray for you and your baby. She is so adorable it's impossible to believe she is so very ill. I hope you will do one thing: turn to Jesus in your mind's eye and say, "Okay. I trust You. I trust You. In this horrible time, I trust You.

My son, who is now 10, was born at 27 weeks and had a brain hemorrage. He has a severe cerebral palsy. I don't know anything about apnea, but the pictures show me that Tessie is doing great. A child that sits on her own before reaching 3 yo will most likely accomplish all gross motor skills usually seen as necessary for every day life. The fact that she's talking on her own is also a great sign. The fact that she smiled so early on points to a good intelligence.

Barring apnea, of which I know nothing, I'd say Tessie will thrive with early intervention and if I were in your shoes I would try to get PT, language therapy and occupationa therapy for her based on that MRI result.

Please note I am not a dr or health professional. I'm just a mom.

I think often of you and your beautiful family, and I send you a big hug.

I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!

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